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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Wessely honoured with a knighthood for his work for GWS and ME

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2012.

  1. Firestormm

    Firestormm Guest

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    Wildcat. I won't then commiserate with you. I have provided advice. Plenty of advice over plenty of years. I have recently 'won' an appeal for ESA and one for DLA - so maybe just maybe I do know from where you are coming (in this respect at least).

    No diagnosis automatically affords the right to benefits unless terminal or unless a person is undergoing chemotherapy (and one rule on this latter has only recently been changed).

    Arriving at an assessment or tribunal armed with scientific facts or medical opinion on what ME is or isn't will not help the individual IMO.

    All claims are made based on the way in which a person's ability to function is affected by their disability. When my own decisions were turned down, my disability was not the issue.

    It was - and remains - the degree to which my disability prevents me from doing the things that they have decided are important indicators of my ability to work - or in the case of DLA - mobility and care needs.

    I have to say, Wildcat, that I am not endeared to your attitude towards me. The 'system' sucks for anyone who is sick especially. The deck is stacked against us. It is a very hard fight and it isn't enough any longer to be deserving.

    Having to fight when unable to do so is wholly wrong in my view - more so when those whose existence is supposed to enable them to fight alongside or in place of those who cannot fight for themselves is being restrained by Government funding e.g. Citizens Advice.

    Even if I were to lose the next assessment then I would still maintain my view. Just because I finally won my appeals does not mean I am enamoured of or defending the system. As regards the Work Capability Test there has been a concerted effort by those organisations representing 'fluctuating conditions' (meaning symptom fluctuations before you ask) that MIGHT change the way in which the assessment process is delivered.

    I don't know if you have read it or followed it's development. If you haven't and want to then I'll post a link. It is now at the point I seem to remember where the DWP will be considering testing the revised questionnaire - though I will be honest here and say that I think the revised questions are too complex.

    I will conclude with saying that in my experience, a tribunal is a better place to get ones case and situation across than by simply completing forms and trying to get suitable and accurate medical evidence. I found it more preferable as the court could see how much this was affecting me.

    I found I could try and talk and help them to understand. But at the end of the day they are constrained by the law and by their own interpretation of it. If you want my advice - I will say this. Do not hold anything back when in front of the assessment panel or in court. Break down if you have to. Personally I find talking about what I can and cannot do very upsetting, as well as my dependence on others.

    I think that where I have gone wrong in the past is to put on a brave face when I should have been far more realistic. But that's just my experience and I do genuinely wish you well. If you haven't already done so then have a word with the ME Association (if you can bear to I know that they are not everyone's 'cup of tea').

    Fire.
  2. Holmsey

    Holmsey Senior Member

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    I'm certainly far more knowlegable now, but had I to do it all over again I would, in life I'd never dislike someone simply because I was told to, I need to see the proof of bad character. If you recall I dis ask for such proofs and even that seemed to annoy some as if I was challenging what they saw as fact, turns out thought that much of what has been claimed simply wansn't true, many beieved it to be so but only because they hadn't questioned prior claims. The man has clearly done much to be critisized for, so why bother with the extra step and demonise him.

    I have to say for me at least the jury is still out regards his character, while there's no doubt that over time his views have been, shall we say, 'repositioned' I'm still to see the smoking gun which shows that he's a calculated liar rather than a beleiver who is misguided, the 'repositioning' must be troubling for him, but I'm guessing pride and face will stop him admitting it publically until the game is well and truely over.

    I'd concede that he's certainly political though, but to be honest I can't say whether that's good or bad without seeing him on a day to day basis and deciding if patients or politics come first.

    One of the first things I became aware off regarding him was the charity cycles he was doing for the military, that's always going to win him friends, and I'm guessing as it saves the Government from doing the right thing financially by our troops, it's worth a gong.

    I'm sure we both accept that there are far more deserving cases out there, doing more, selflessly and without fanfare but they're the kind who find reward in the doing not in the seeing to have done.

    Another political feather to this whole saga, Government are screwing the public sector financially, so throwing a few gongs their way makes it seem like they still appreciate the NHS at least. Watch out next year for a few going the way of the Police or Teachers. In the end it's all a crock of s**t, but as I said, none of it changes anything for us, it's just an old boys back slapping stage show.
    barbc56 likes this.
  3. Holmsey

    Holmsey Senior Member

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    Yes, I suspect much of his work is coloured by actions he sees as rewarding those who have rewarded him, beyond that I suspect there's an inner battle of trying to keep the pyramid of cards from falling down. I have no doubt that the GWS 'investigations' were coloured by a fore thought of 'hmm, this seems very like ME/CFS, so since I've been told it's definately not depleted uranium then it must be psycological', and how important was it to the West that depeted nuclear waste added to munitions wansn't to blame, I'd say about as important as the tobacco industry refuting any claim that they were adding addictive carcenogenics to cigarettes.

    Where you can't fault him is that he appears at least to have taken psycological care for vets, and lets face it they need it more now than ever before in history, forward, again I'm guessing, but that's probably why a gong went his way.
  4. Valentijn

    Valentijn Activity Level: 3

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    I'd characterize him as both a calculated liar and a misguided believer. He advocates deceiving patients extensively for their own good when necessary. Semantic games aside, there isn't a moral distinction between deliberately nurturing a false impression, and outright lying:
    Also, to be a true believer in psychological causation of ME/CFS, and our alleged bias against psychiatry, despite all of the research to the contrary (some of which has his name on it), requires a rather remarkable warping of his perceptions of reality.

    For example:
    Roy S and Min like this.
  5. Bob

    Bob

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    That statement, in itself, demonstrates the quality of the King's College, London, document on GWS.
    Many of us know, through bitter experience, that we have a cognitive disability.
    Do they not come across patients that can't read for long without their brains shutting down?
    It's more evidence that they ignore the patients that don't fit into their preferred model of illness.
    I'm certain that I have come across research evidence that demonstrates cognitive disability in CFS patients.

    There's no reference for the assertion re CFS.
    There is a reference for the paper that allegedly demonstrates that 'veterans' do not have impaired concentration and memory. Interestingly, it is co-authored by someone called S Wessely:

    Cognitive functioning and disturbances of mood in UK veterans of the Persian Gulf War: a comparative study.
    David AS, Farrin L, Hull L, Unwin C, Wessely S, Wykes T.
    Psychol Med. 2002 Nov;32(8):1357-70.
    http://www.ncbi.nlm.nih.gov/pubmed/12455934

    I haven't got access to the full paper, so I can't judge its quality, but it doesn't seem to be an investigation into GWS, specifically, and nor does the King's College document.
  6. Holmsey

    Holmsey Senior Member

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    Yes I've noted of late that he's rather reluctant to repeat, or even elaborate upon, some quite categorical statements he's made in the past. (COM).

    My feeling however is, that as a group, we either accept he is now irrelevant and start ignoring what's happening in the world of make beleive, or we co-operate fully by way of 'proving' that the psycological model is nothing more than very selective hype.

    We have to get smart, and clearly from the two awards in quick succession, decrying SW, often with inacurate or angry retoric, isn't smart from a progress point of view. I want to get better, I'll worry about working out where and whether I need to get even once I have my life back.
    barbc56 likes this.
  7. Bob

    Bob

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    I agree. I favour the latter approach, as I think that ignoring proponents of the psycho-social model will give them too much freedom. IMO, the psycho-social model needs to be rigorously challenged, while at the same time encouraging and supporting biomedical research which will be what ultimately brings us answers.
    Holmsey, alex3619 and Valentijn like this.
  8. Valentijn

    Valentijn Activity Level: 3

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    There was a study done on CFS patients involving Wessely, at http://www.simonwessely.com/Downloads/Publications/CFS/73.pdf:
    I think they're essentially concluding that we think we're trying hard, but we're not, because we have an exaggerated sense of how much cognitive effort we're exerting, in the same way that they assume we have an exaggerated sense of how much physical effort we're exerting.

    So they make the objective cognitive abnormalities disappear entirely. I'm pretty sure one of the GWS papers had a similar result and conclusion dismissing it.
  9. Bob

    Bob

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    Erm, no.

    Honest and careful clinical observation would do.
    Or use the existing descriptions of GWS, as the basis for a hypothetical discrete illness.

    Historically, there is a method to define an illness, and it hasn't necessarily relied on large data sets.
    The method is: careful clinical observation.
    The way to define a disease is to observe signs and symptoms.
    Once you get a cluster, or set, of patients who display the same (or similar) signs, or who have the same (or similar) symptoms, then you can hypothesise that they have exactly the same disease, and more forwards from there to investigate it further.
    Once you have a carefully defined set of signs and symptoms, based on careful clinical observation of a set of patients, then you can investigate further, in order to prove or disprove the hypothesis that it is a single disease.

    This can even be done with a single patient, in rare disorders.

    It's really not rocket science. This basic science/medicine is what has been neglected for CFS.
    I hope that this is what the CDC is now working on, in its new project. But as it is the CDC, we can only hope.

    If clinicians don't carry out this basic medicine, but just lump all patients who experience 'fatigue' together, without bothering to try to differentiate them, then the science can never move forwards. Not only is it good medicine, but it's also just common sense to observe patients closely, and to try to differentiate sets of patients. The same applies to GWS and CFS.

    As an example, all patients displaying a rash, would not be lumped together. Instead, a careful observation would be made of the nature of the rash, and associated signs and symptoms, in order to distinguish patients, and to create subsets of patients. The rash could be due to: eczema, psoriasis, measles or meningitis etc. A good clinician would not lump all patients together (who displayed a rash), and declare that as some patients had a stress-related rash, then those patients who had rashes that didn't clear up had maladaptive illness beliefs.

    Really?

    Unless they investigate patients with a similar pattern of symptoms, and health experiences, then they'll never know if there is a distinct illness.
    Wessely's approach (for both GWS and CFS) seems to be to investigate patients with a diverse, unselective, wide, and vaguely overlapping, pattern of symptoms.
    And then to make conclusions about GWS/CFS based on observations of a selected minority of patients who do not have the illness that he is superficially purporting to be investigating.

    The article that you cited is just an article, written by one person. I wouldn't place too much weight to it. There are other sources, some of which have been cited in this thread.
    Ember likes this.
  10. Bob

    Bob

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    I applaud you for your patience, in explaining this, Mark.
    However, judging by past experience, it will have to be explained repeatedly.
    Valentijn likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    My apologies for the delay in getting the relevant quotes into the post you're referring to at http://forums.phoenixrising.me/inde...work-for-gws-and-me.21116/page-12#post-322490. I had some serious issues with envolve (the forum chat thingy) trying to load for eternity and couldn't edit my post for quite a while :confused: But I think my rhetoric was accurate enough, with those quotes taken into account.
  12. biophile

    biophile Places I'd rather be.

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    I have to wonder, if Wessely believes there is no distinct GWS and/or lumps it in with CFS/MUPS, do his allegations of harassment from CFS "militants" extent to those with GWS?
    alex3619 likes this.
  13. Bob

    Bob

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    Thanks Valentijn.
    So even their own research demonstrates cognitive disability in CFS patients?
    I'm certain that there has also been non-Wessely research which demonstrates that CFS/ME patients have cognitive deficits.
    I'll look it up later.

    (Edited.)
  14. Daffodil

    Daffodil Senior Member

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    fking sick fks.

    enlander has appealed to the queen in letters years ago, urging her to do something about the state of CFS patients in the UK. i think he was just ignored. enlander was the doctor in waiting to the royal family.

    what on earth is the use?
  15. alex3619

    alex3619 Senior Member

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    Hi Holmsey, I almost agree. However, the idea that we must now all take the same position in unfeasible and not necessary. However a coordinated effort to analyze what has gone on and discredit it on the basis of evidence and reason is I think possible. I would not have started writing my book if I thought otherwise.

    Blaming people leads to all sorts of problems. Focussing on the written evidence is much better in terms of what can be uneqivocally shown.

    I think I am still not going to use the Sir though. Thats just my quiet little protest.

    What is different in my approach as I currently envisage it (having not done most of it yet) is that I want to catalogue and analyze options for fixing the issues, not just show the problems.

    Bye, Alex
    anniekim and Valentijn like this.
  16. alex3619

    alex3619 Senior Member

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    There are three aims in advocacy. Help people, stop bad science, and promote good science. I used to say four, but helping patients and make an eventual treatment or cure available to all is really just one mission: helping people.

    I have no doubt that between us we have the skill set to stop the bad science. We just lack resources, projects to focus our actions, and the health to follow through as much as we would wish. A few thousand more advocates wouldn't hurt either.
    Valentijn likes this.
  17. Holmsey

    Holmsey Senior Member

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    No Valentijn, my appologies if you though my reference to angry rhetoric was aimed at you, it was a general comment on where almost all conversations on SW end up, strangely this thread hasn't been as bad, maybe it's the feel good holiday factor.

    Best wishes,;)
    Valentijn likes this.
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    This shows how far down the "rabbit hole" the sick, filthy government/system of the UK has gone...and yesterday, Ian Duncan SMith (who runs the welfare department of government) claimed those on welfare were getting too much!!

    http://www.bbc.co.uk/news/uk-england-london-20897681

    I used ot be built like a brick shithouse, 14 1/2 stone, 50 inch chest, had bother getting jackets/shirts that fit or I'd rip them when flexed, weight trianign routine, martial arts, walked miles every day.
    now I'm a 19 stone blamange'. I DID NOT CHOSE OT BE FAT YOU SCUM!!

    this all ties in with Wessely, it's the attitude, the culture, the cliques, the mind sets, the completely F'ING INHUMANITY!!!

    BURN IN HELL YOU B*ST*RDS!

    Sorry to distrub the trian of a nice flow, yer debate is sane folks :) but those against us, are *not*
    Valentijn likes this.
  19. alex3619

    alex3619 Senior Member

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    There is a trend in western civilization toward authoritarianism. This has been going on for several decades. At what point will there be a backlash? Or will we all succumb? Forcing people to exercise does not necessarily achieve results. Dealing with food is a better way to go, such as finding ways to ensure healthy food is much cheaper than junk food, whereas currently junk food is cheaper (I presume, it is here). It would also help if exercise facilities were cheaper for those on benefits. Incentivise, yes, penalize, no. Not everyone will be helped by penalties, and its just a way to be nasty and punitive to no good effect for those people. That will have consequences for social cohesion, which in the UK is already under severe pressure.
    Valentijn likes this.
  20. user9876

    user9876 Senior Member

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    Part of any classification or clustering process is to have a defined feature space. Hence a precursor to clustering on a the whole cohort would be to have a consistant way to describe symptoms. This would mean doing things like defining a more accurate language to describe fatigue and other symptoms.

    It does seem strange to me that no one has done this especially given it would be easy enough to use standard questionaires across multiple treatment centers, scan them then there is database software that will do much of the analytics.

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